Getting Real input from the Public

One of the challenges I've seen over the last six to seven years of being involved in the development of healthcare standards is that of obtaining good public input on the development of standards or regulation affecting the industry.

The first problem is one of effective marketing about the opportunity to provide comment.  In the legal space, notices of pending law and regulation make it out only to state or federally sponsored web sites.  Every law or regulation is treated equally in that regard.  With standards, again notice only goes out to members of the SDO or profiling organization, rather than broadly to the industry.  In both cases, affected populations can remain largely ignorant of pending actions because there's no concerted effort to notify them of these opportunities.

The media is largely unhelpful.  Even when they provide information about pending laws or regulation, they rarely provide information about where the public can provide feedback.  For example, this AP story published in the Boston Globe talks about a pending IRS rule that affects consumers using health cards to pay for non-prescription drugs.  But nowhere in this article did the AP provide the link to the pending change (pdf)  so that consumers could find it and provide feedback to the IRS and Treasury department.

Similarly, you will rarely if ever find a report, even in the healthcare IT related media, on new work available for comment from HL7, IHE, CAQH, Continua, X12 or the numerous other organizations that produce standards and implementation guides.  Perhaps it is due to lack of demand (in which case the fault goes right back to the consumers), but I think this is in part also to a lack of attention to this topic from the producers.  We hear all about new initiatives from some organizations like the Robert Wood Johnson Foundation, or Markle's Connecting for Health because those organizations have highly evolved and staffed marketing arms.  But technical standards development organizations which are mostly volunteer led simply don't have that expertise freely available.  I think there are a few things that could be done differently.  For one, if every SDO put out a press release and sent it to the relevant media outlets, I think they might get a bit more attention to their efforts.

From the side of the public, there are other challenges.  At a public event a few months ago titled Crossing the Infrastructure & HITECH Meaningful Divide, I spoke to a largely non-technical audience about Meaningful Use and Standards and the need for their participation in the discussions both at the regulatory level, and at the standards making level.  The audience responded that there are some very big challenges for them.  For many organizations, devoting sufficient resources and expertise to make a meaningful contribution is time intensive and daunting from an outsiders perspective.  It's hard to understand and even harder to be heard when you don't speak the language of the SDO "insider".  And yet, part of the formation of that language is a necessary component of the norming process.  We establish these little languages and vernacular so that we can understand each other, and know what we are talking about.  And unless you've recently come into the discussion with an outsider perspective, its very hard to know what you need to explain, because you've already learned the langauge, and so don't know what others don't know.

But, if you want to regain some control over what is going on around you, you also need to be listening and participating in the right places. The best way to make the SDOs more responsive to YOUR needs is to talk to them.